The Beat Goes On


Today did not go the way I hoped it would. Not at all.

Today I took August to the ENT and really, I shouldn’t have bothered.

Before we even got to the appointment, I knew that August was “off.” By eight AM he had deep circles under his eyes. He was distant, and not at all his usual, cheery self. He ignored other people, which isn’t like him. He was unusually clingy.

So we get into the doctor’s office and I SWEAR August has never looked more Autistic. He literally sat in the office and waved his hands in front of his face and completely ignored the doctor’s attempts to interact with him. He wanted nothing to do with her and that was abundantly clear. The doctor, who was very nice, found no fluid in his ears and he passed the hearing screening.

This leaves us with approximately zero answers. The doctor’s first recommendation was that we make an appointment with a neurologist, which is the exact opposite of what I wanted. She also told me that I’m already doing everything I could possibly do.

I’m really unsure what my next step should be. I’ve known the pediatric neurologist for almost five years now and I have a pretty good idea of what she’s going to say–she’s also going to rely heavily on my opinion and report and I have no idea what I think. I don’t know autism. I mean, if this is autism, it must be really mild. Or unusual. My gut is saying it’s not autism–that it’s something else. It could be that he just inherited the calm, quiet, solitary personality of my husband. It might be an auditory processing thing. It might be a twin thing.

The doctor discussed doing a hearing test under sedation (ABR), and we might go that route. He’s also going to be getting speech services and I’m hoping that will help us figure out if this is developmental or hearing related. The most frustrating part for me is knowing that in a few days he’ll probably be “on” again and these issues will be pretty much invisible. And what side do I want the doctors to see? I’m not sure.

In all of this, the worst part was the warm fuzzy words from the doctor about how even if he is on the spectrum that doesn’t mean he won’t amount to anything. Or something like that. When Charlie was little, and his brain was a disaster area, I really need people to tell me things like that. I craved professionals who were optimistic about my child’s future. But now? I don’t want to hear it. I’ve been there and bought the t-shirt. August is going to be who he’s going to be and my job is just to make sure he’s the best version possible. I’m really not sad. Maybe a little worried that I’m messing up my kids if I’m being completely honest, but I know we can handle this whatever it is.

boy playing with bead toy in waiting room

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Comments

  1. Big hugs to you mama! As you said, we’ve been there, done that and bought the t-shirt. We had to do the ABR with Matt shortly after his first birthday because we just couldn’t get a definitive read on his hearing. He was either spacing out or freaking out at every single audiology visit. At least if you do it, that’s one thing you can definitely remove from the list. I guess one blessing out of all of this is that you already have a team assembled that you trust.

  2. Danielle CrochetChick Card says:

    Deep down I hope you do know that you are not messing up your kids. You are an amazing woman, and do the very best that you can for your children. I hope that in your testing and specialist visits that you find peace and an answer. I think the biggest fear sometimes not knowing what is wrong. Maybe it’s nothing at all, and dealing with Charlie for so long has clouded your judgement. I had that problem with my youngest. After raising a child with CP who has speech and developmental delays, I would find myself scrutinizing every little thing she did and compare it to him. Kids are all unique and all do things their own way so there really is no point in us torturing ourselves with this.
    Anyhow, if it is autism, if it’s not, if it is hearing or something else not yet considered, no matter what, I know that you will make the best of anything that comes your way and will encourage your children to all live up to their potential and be the very best them they can be.
    But, if there is something wrong, and you still have the lingering fears that you are the cause, genetic testing may be something you would consider.
    Either way, chin up. *hugs!*

  3. Parker just had a sedated ABR. The results weren’t pretty. And I’m still in shock. Big shock. The thing is, Parker turns into total squirrel bait when we take him into an an audio booth. So hearing tests in that setting are useless.

    But ABRs don’t give info to know if the hearing loss is medication related, or just related to ongoing, never ending, infections with scar tissue and granulation tissue. You’ll be able to totally remove any conductive hearing loss with a great ABR.

    sigh.

    The only good thing is that we will now get more speech/signing services and this teacher will focus on teaching him with an eye on his hearing loss, which is different from his other speech teacher techniques.

  4. I know some people with ASD kids had their dx from a Neurologist. But ours was from a Developmental Pediatrician. And yes, we went through the hearing screening test first, too. Although no one talked to us about the one with sedation.

    You’re way ahead of the curve. Getting a diagnosis before 18 months is quite rare but is also incredibly useful. Services at that age can do an unbelievable amount of good, even if you don’t know whether they’ll work or not.

    Anyway, I know you’re in for yet another round of figure-stuff-out-with-lots-of-doctors fun, but I wanted to leave a supportive and hopefully helpful comment from an ASD mom. If you need advice or help or anything, please let me know. We are a pretty big community and if you’re looking for good docs in your area I can always put out the request.

  5. My grandson, who is now 5, had very similar symptoms to August as a baby and toddler. My daughter-in-law decided in had to be from food because the symptoms came and went and started keeping a detailed food diary. It was clear that food was part of it. Today he has a restricted diet, including gluten free, and there was marked improvement almost right away. Although some of the allergy tests that doctors ran did not show an allergic reaction, it did show behavioral changes. Good luck and keep up the good parenting.

  6. Could you take some video with you to the appt of examples of behaviors that concern you and then some of his “normal” time?

  7. Catherine says:

    I’ve worked in early intervention and videos are really helpful if August is only acting certain ways occasionally. Just use your phone or the iPad to record some examples. I’ve also worked with a lot of families who have found significant behavioral changes with changing the child’s diet (gluten-free, diary-free). It’s not researched based but it’s worth giving it shot. Love reading about your kids!

  8. sally fraley says:

    I agree with Liz. My son has issues with red food coloring and nitrates that wouldn’t show up on an alergy test but most definately affect his feeling of wellness and as a kid-behavior.

  9. Oh how frustrating! If you haven’t already, what about videotaping August from time to time to show both sides of him? It could really help a specialist know if it’s autism or not. I agree with Jessica: M got his diagnosis from a developmental pediatrician. He was 16 months old. The DS said it was either autism or a severe communication delay and to come back in 6 months after M had had another hearing test. In the meanwhile, he gave him the diagnosis so we could get started with services. 6 months later it was even more clear that autism was the right diagnosis. I have no idea if August has autism – and I think “Mommy Gut” is one of the best indicators, so if you’re not feeling the dx, keep searching for what fits! – but if he does, an early diagnosis makes a huge difference. We saw improvements with M that his therapists said we likely would not have seen had we waited another year or two.

    Good luck with the ABR! I hope that you guys are able to find the right answer soon.

  10. If only all parents were as on the ball, reflective and resourceful as you are! As a Special Ed teacher who sometimes gets kids with severe issues who’ve never gotten a minute of services before Kindergarten- you are doing great! Diagnosis on little little ones are really tough. I agree, do the sedated hearing test, and start looking closely at food, drink, and drug intake. Such big changes between “on” and “off” have to be correlating with something! Best of luck to you- and thank you for sharing this process so honestly.

  11. I don’t want to tell you anything you may have already tried but: have you seen a pediatric developmental specialist? They’re the types who best diagnose stuff like Autism and stuff that appears to be Autism. No matter which way it turns out, August is so lucky to have such a fierce advocate of a mama.

  12. Hmmm, I’m going to have to think on this one. Could he have sleep apnea? Often those cause dark circles. If your gut says it’s not consistent enough to be autism, then that’s a good place to start. I agree with the taking video of typical and atypical Auggie stuff. Start documenting stuff like his food, activity, and exposure to possible allergens and then note when his behavior changes. It’s possible there may be a pattern. Also, check the changes in air pressure. Sometimes that can really mess with small children. Could it be a sensory thing? I don’t know. Could it be an eye thing?

    and NO, you are not messing up your kids. Not at all.

  13. Absolutely you can!

  14. Katie, after reading this my first thought was I wonder if food plays a role too. My son has those eyes and bad days after having food he is sensitive too. We follow the Feingold diet (www.feingold.org) and I know it may sound kooky that food additives have that large of an effect on kids but it has made a world of difference in our family. I would try the food diary too just because changing everything might be a bit hard right now with a little one too, but it might help. Praying for positive outcomes.

  15. First of all, hugs!

    An ABR will tell you if the brain is receiving signals from the ear. It won’t tell you how (or if) the sound is being processed. Luke had one when he was 3. It wasn’t until he was 8 that we were able to get a good hearing screening. Part of the screening issue was the autism and part was he has hearing issues when there is fluid.

    If you can find a good developmental ped, I would recommend that route. There is also early intervention for the behaviors that could be autism related. At his age, knowing it is or isn’t autism isn’t as important as making sure the behaviors aren’t related to something correctable (e.g. food as another person suggested). The intervention is really just play at this stage. But the therapist works hard at making sure the child does typical things, like notice their surroundings, point to objects, etc.

  16. My friend, Kim, has a son with aspergers, which is a type of autism, from what I understand. He has moments where things affect him and where he socially doesn’t respond well to people. He’s gone through therapy and attends a school where the classes are small and the teachers are better able to individually work with each student.

    You’re a good Mom. You’re doing the best for him and you’re going to give him the best life possible.

  17. I was going to suggest that if you really don’t think it is autism then the other possibilities are food allergies or sensory intergration dysfunction. He may even have that dreaded blackhole of PDD-NOS.
    The fact that he has on times and off times sounds like something is affecting him and it doesn’t have to just be a food allergy.
    We went to three different docs before we got a definitive diagnosis and it was the neurological pediatrician that gave us the label.
    I had to laugh at your ENT Doctor’s attempt to make you feel ‘better’ about the autism possibilty, because our paed told us that it is ok maybe my son would grow up and talk to animals. Now I know he was referring to Temple Grandin and messed up the comparison royally… back then though it pissed my husband off. He was livid for days and to this day (9yrs later) he still froths at the mouth when I remind him of it. LOL
    Hope you get a definitive answer soon and just want you to know you are taking all the right steps…. but you know that 😀

  18. Sending you a huge hug and I am 1000000% confident that you are an amazing advocate for your children and take my hat off to you (if I was wearing one).

    I have no idea what to suggest, but I think that diet is a good place to start. I have urticaria, and even though allergy tests came back balmy and non conclusive…. I decided to go on an elimination diet and with a food diary me/my parents help me figure out what caused the urticaria…when I was 17-18, I used to scratch my skin so much I bled. The doctors told me I was nuts, but for me it’s dairy, and food colours and I’m better with less gluten in my diet. I’m now in my 30’s and haven’t had a bad case of urticaria since, the only time is when a restaurant LIE about what is in the food.

    Whatever you do, I know that you’ll make the right choice, even if you go an explore one avenue and end up back tracking, it’s not a mistake or a mess up, it’s a re-evaluation.

    Sending you huge hugs,

    Mel
    xxx

  19. I think someone above already mentioned this..but I am wondering if this might be an allergy of some sort. The one thing I took away from Jenny mccarthy’s book about her son was that he reacted to food. It made his symptoms worse. He had the pasty look. The dark circles, etc. I work in special Ed and I have no opinion on ms. McCarthy ‘s book (or none I want to express) but what she observed about her son, and when it was addressed her observations about his physical and mental states…sound very much worth checking into for your son.